Working in the medical field for over 30 years helped me navigate health care appointments for my rheumatoid arthritis. I’m not afraid to ask if I need a test, and if I think that something needs to be looked at, I’m not shy: I ask. The patient has a right to do that, and I have a very good relationship with my health care team.
After years of trying different medications that I couldn’t tolerate for long periods or that didn’t work for me, including methotrexate and NSAIDs, I started taking a biologic in 2001, 10 years after my diagnosis. I’m still on it. For me, it’s been a life changer. I think it’s the reason I’m still able to work full-time, which in turn keeps me going.
What also helped was finding a community who understood what I was going through. In 1991, the only way I could see how people handled living with rheumatoid arthritis was by watching VHS tapes from the library. I didn’t know anyone else with arthritis when I was diagnosed, or anyone else on my treatment. I wanted to talk to somebody else and see how it was going for them, and share my great experience with people.
For years, it felt like no one understood. If I tried to talk to someone about the pain and the obstacles I was facing, people accused me of being negative. I needed to find people who were uplifting.
In 2002, I discovered CreakyJoints, a community for people with arthritis. Meeting other people online in the chat room and later on the Facebook page was really helpful, and I started reading the monthly newsletter. Although I’m naturally a shy person, I wanted to get more involved. I edited the poetry section of the newsletter for three years, helped put together a book in 2017, and became one of the first members of the patients’ council. We meet monthly and work on pamphlets to help raise awareness, especially about the mental health side of living with arthritis. I really want people to know that if you’re having a hard time coping, it’s okay to find somebody to talk to. You don’t have to go this alone. There are people out there just like you. And when you reach out for help, you’re not only helping yourself, you’re helping others as well.
As hard as rheumatoid arthritis can be, I’ve always had hope. In 2020, I started noticing that I was feeling better. Things like getting dressed, which could be absolute agony, were easier. I started seeing a new rheumatologist in February, and after a check-up in August, I found out I was in remission. I thought, I’m in remission? I was shocked—it was awesome!
Being in remission from rheumatoid arthritis is almost like being given a gift. I was briefly in remission 10 years ago, and even though it only lasted a couple of months, I always said it could happen again: I never gave up hope. I’m hoping it will last longer this time.
I’m very aware that I still live with rheumatoid arthritis. It hasn’t suddenly gone away, it’s just that things are quiet right now. I still experience fatigue and I still live with pain. I have joint deformity from before I started taking the treatment I’m on, and that will never be fixed. But I haven’t had very bad days since remission. I still have to be vigilant and keep taking my medication, and keep doing all the things I’ve been doing to stay healthy. Exercise is very important; I walk half a mile to and from work most weekdays, even in the winter! I also know when to rest, especially since I’m more vulnerable to infections on the medication.
Attitude is so important too. When you have rheumatoid arthritis, not every day is going to be great. But I find that if you can bring humor, even when you’re in pain, it can at least get your mind off it for a little while. And don’t ever give up hope. I trust scientists, and just look at the drugs that are out there now, and the ones that are still being developed. I’ve lived with the disease for a long time, and I want people to know that I’m proof that remission can happen—and it’s great.
This interview has been edited and condensed for clarity.